Stroud Symposia

81 Search Results:

H. Spirituality > 1. Sample narratives
• As a Chaplaincy Assistant in our local hospital I organise a team of volunteers who visit the wards inviting everyone to the multi-denominational service on Sunday mornings. Those with dementia often express a strong desire to join us. But invariably staff advise us not to bother because ‘they’ll be disruptive’ or will want to wander. I assure them that (as I have experience as a carer) we will watch over them and take responsibility for their safe return. It has never been necessary to escort anyone from the room because of disruptive behaviour H4, in fact even the most severely affected persons have been seemingly enthralled watching the Minister and enjoying the spiritual moments, absorbing the calmness and atmosphere, especially the hymn singing. It seems to me that RGNs [registered general nurses] need to be educated regarding the needs of dementia patients, as they (mostly) seem to regard them as a nuisance, as they do not have time to give the personal attention that my volunteers are able to offer. PROFESSIONAL UK

I. Stimulation > Rest as requested
• , being able to rock or swing myself silly when needed or just sit and stare. Lots of quiet time and little noise.

K. Supporting Caregivers > 2. Any other
• . Just like ‘normal’ relationship, both parties need space and time to do own things

C. Love and Trust > 1. Sample narratives
• 1. Much depends on the quality of relationship prior to illness. 2. Communicating in new ways that suit both carer and person with dementia. 3. Just like ‘normal’ relationship, both parties need space and time to do own things. 4. Human love is transcendent.

G. Creativity/Aesthetics > 1. Sample narratives
• 1. What makes up quality of life is for people with dementia? It all has to start with acceptance then comes coping skills, healthy eating exercises, I believe in Vitamin E,C B6 B12 folic acid and exelon and Nameda. My doctor and I believe my weekly lectures, travels for AD and writing the book kept my brain active. This is not to say the daily living is not a struggle but it gives me quality of life by having something special to share with people who would not alone understand. Being frail and in bed with a full time care partner. HAWAII PERSON WITH DEMENTIA

A. Choices > 1. Sample narratives
• 2. What improves quality of life for people with dementia? The loving care received from our care partners- friends and family. The understanding and help we receive from folks who work with us. The support and acceptance we receive from groups such as DASN and Living with memory loss support group Being allowed to do things ourselves, with as much help as needed to make the activities as stress free as possible-rather than having people take over and do it for us so that we still have that sense of achievement The assistance we receive from our Government that enables us to receive medications and care at a price we can accord and makes us feel like we still have value in our community. The understanding and advice given to us by the local Alzheimer's Association people around us and the mental health people we are under. The patience and understanding of a good General Practitioner The medications that help us to enjoy an increased time of being able to care for ourselves, at least in part. Good respite care with people we know and trust and with whom our carers are happy and confident to leave us. Activity groups such as day clubs that cater for our need and interests at a level where we can participate and achieve. AUSTRALIA PERSON WITH DEMENTIA

F. Enjoyment > Enjoy the moment
• ability to live one day at a time

H. Spirituality > 1. Sample narratives
• As a manager of a dementia home which is a Roman Catholic convent it is very intersting to see the effect of faith on people with AD although speech has almost gone and communication is very difficult when attending a service or just singing hymns in their sitting room they always remember the words of prayers and hymns. My own father had severve dementia but a few days before his death we attend a service in the lounge of his home and he sang loudly to all the hymns, I was amazed by this and very touched. If a person has a faith it seems to always be there even at the end when often all other sommunication has gone. I am amazed at how many people wish to come into the convant because of the religion, many say it is so important in their loved ones time of suffering with AD.to be in a spiritual enviroment. I feel that many of those suffering AD almost have a calmness with them.

H. Spirituality > 1. Sample narratives
• As a nurse working in a rest home I have found that spirituality in the elderly with dementia is very important to them whether it be by sitting quietly and feeling connected to God or enjoying creativity or enjoying others entertaining them. My own mother who has dementia would like to go to church every day. She was/is a very religious person and helps out in various ways in her church. When she is in church she just sits there and absorbs the atmosphere around her. People have said they enjoy sitting near to her, Her spirituality invades them. My mother responds well to be called by her first name. She will not know who the person is who is talking to her but smiles and greets this person because she knows intuitively that that person is a friend and will not hurt her. She now goes twice a week to an Alzheimer group where she participates in games and has good social interaction with those other people there. As I work I have a carer coming into help mum for some of the time I am away. She feels safe and secure with ‘R’ who she has named Jane. Mum treats ‘R’as part of the family and welcoming when she arrives. At times she will get angry and verbally aggressive with her as she does with me. I was told that mum didn't have delusions but fractionated images that were real to her. She has 2 children and her images are about her children at different times in their life. At times it is difficult to tell which baby or child she is talking about when she is talking to me her adult daughter. She might say "H, where is that ‘H’ is at someone place". I often placate her by telling her she is in Christchurch with my sister which she accepts. We live in Napier. J NEW ZEALAND PROFESSIONAL

G. Creativity/Aesthetics > Activities
• As I work I have a carer coming into help mum for some of the time I am away. She feels safe and secure with 'R' who she has named 'J'. Mum treats 'R'as part of the family and welcoming when she arrives. At times she will get angry and verbally aggressive with her as she does with me.

C. Love and Trust > 1. Sample narratives
• Being able to choose within boundaries of safety and routine suitable to resident. Love and care showing through in your individual care, body language. Staff levels with time to give to the resident when you see, love and care. What makes it worse: let me do it - within the safe environment. Regimented Unit, time to do, eat, shower, sleep. Talking about or around the person. Staff levels not adequate to cope with situations that arise when you see love and care. NEW ZEALAND CAREGIVER

F. Enjoyment > No rushing
• Being impatient with the person - not giving them time to live life at their own pace.

A. Choices > Safety,not overprotective
• Being included in activities and allowed to take time to get things wrong. Being able to do things their way and take chances.

B. Relations/Communication > Keep communicating
• Communication is the key to maintaining a good relationship. Patience, patience and more patience.

I. Stimulation > Moderation
• Constancy, routine = meals, activities, bed time etc. People around - family and helpers. Quiet - 'Let me doze or sleep."

B. Relations/Communication > Quality time
• Do things together each day. One on one. Sharing feels, fun. Singing together. Time to be understood. Time to understand. Have a book for activities you are doing together.

I. Stimulation > Moderation
• Don’t stress us by time pressure or background noise.

A. Choices > Safety,not overprotective
• Environmental: by providing a safe environment for patients especially at night to overcome problem of night wandering. I have worked for 12 years in a secure specific dementia unit with mainly D6 patients. I was sitting next to a little, frail 93 year old lady about 4'8" when another patient male about 6'2" walked past. This little lady was extremely confused but had an occasional lucid moment and she said to me 'I'm scared of that man, he follows me and sometimes comes into my room at night'. Consequently the bedroom doors in our unit were cut in half to make a stable like door, the top half left open at night but the bottom half closed with a latch lower down on inside so as to keep wandering patients out. I felt for this little lady who most of the time was not able to express her feelings but could feel her fear over this situation.

J. Basic Comforts > Diet and nutrition
• Give sufficient time to eat

C. Love and Trust > 1. Sample narratives
• Give us emotional warmth = love. Don’t need us to remember or recognise you. Don’t stress us by time pressure or background noise. Don’t forget people without children or spouse!! Where does their QOL come from? AUSTRALIA PERSON WITH DEMENTIA

E. Self Esteem > 1. Sample narratives
• Holistic, multidisciplinary care essential. We view carers and those with Alzheimer’s as “a package”. If you concentrate on self esteem (for all concerned) everything else falls into place. I agree about humour. In an out-patient block our rooms are the only ones where laughter comes from. It does however cause colleague prejudice – how can you laugh and take your work seriously??? We have more carer groups/meetings where carers and patients can go together and socialise. 4 week sessions lead to families contriving the groups autonomously. I love your mention of spirituality, I have believed this to be very important always (I’m a Celt). There have been times when professionals have felt this area to be too ‘unscientific’ to be valued. Choice works always, for everyone. Multidisciplinary teams must spend time to feel comfortable together, because out of team strength comes the confidence to take/share risk. I have begun to encounter sexual problems more frequently (usually impotence) and addressing that improves self esteem/life. The region I work in is very conservative in attitude, I thought the workshop inspiring – someone else thinks/feels like me! I UK PROFESSIONAL

B. Relations/Communication > 1. Sample narratives
• How dementia has affected our relationship: We were a reasonably happy family with 4 children, doing what most families do. Gradually, and it was gradually, over a number of years, probably about 6 or 7, tensions began to build up. Small things to begin with. C would get annoyed with the children because they didn’t want to do the things that he wanted. He would pick a fight over anything and was very unreasonable. The children stopped having friends around because their dad would embarrass them by saying silly things to them. He said he was just being friendly but he couldn't understand that teenagers don’t like to be treated like children. C had suffered from high blood pressure for a number of years and slowly started to forget things at work. Things that he had done day in day out for years. He forgot names of people he had known and worked with, lost his house keys several times and would occasionally go out, forgetting to lock the door. He became quite aggressive, losing his temper regularly at the slightest thing. He would say I had done something or moved something when I hadn’t, and I couldn’t convince him otherwise. I began going out less with my friends because I was being accused of seeing someone else and was tired of the endless questions. “Why have you got lipstick on?” “Why are you dressed up?” “Why have you washed your hair?” things that I normally did when going out. The children by this time didn’t particularly like their dad any more, and I certainly didn’t like this man. I dreaded him coming home from work. When the children were 20, 18, 16 and 9 we finally got the doctor to agree for James to see a neurologist and have a scan, but this was likely to take about a year. I couldn’t wait that long so we went privately and paid for the consultation and scan. My mind was made up. We argued so much by this time everyone was miserable. If the scan showed that there was nothing wrong, I was leaving C. I couldn’t take any more. While we were at the hospital for the scan, C had picked up a leaflet about dementia for his brother who lived at home with his mother who had just been diagnosed with Alzheimer’s. I read the booklet and was amazed at the number of similarities to C. I tried to talk to C about them, but all he would say was “I’m not like that”. Later C had more tests, then, out of the blue, I had a visit from the community psychiatric nurse and the psychiatrist. They asked lots of questions about C before I had noticed him change. Then they told me that he had dementia. Part of me already knew but I cried probably more with relief now that I knew what was causing him to behave this way. It was the same for the children. Once he began taking medication he calmed down and slowly we began rebuilding our lives. The children called them his happy pills. He became involved with Alzheimer’s Scotland Younger Persons Project and has never looked back, despite having bad days. The children have come through all of this, but I think the boys have struggled more and still do, mainly because they were younger and had enough problems growing up without having to deal with this illness. I would say we now get on as a family. The girls have their own places now and visit regularly, and the boys are at home, RR still being at school. We have all had to make adjustments in our lives to help C. Writing messages on a notice board, reminding him to take his medication, making sure that he is dressed properly for the weather. I sometimes feel trapped in the middle of everything, having had to take on all the responsibilities. I have to decide what things I should tell C about and what not to, because of how he may react as he doesn’t have as good a sense of judgement any longer. We do still get frustrated and times and argue, but no more than other families. I don’t know if C and I will ever get back to the way things were before the illness started, a lot has happened, but for me the frustrating thing about it is that C has pushed it to the back of his mind. It is still near the front of mine. We have had to start from the beginning taking a day at a time, sometimes there are good days and sometimes bad, but we are getting there. SCOTLAND CAREGIVER

B. Relations/Communication > 1. Sample narratives
• How dementia has affected our relationship: You have heard from my wife about the deterioration in family and social relationships, stretching over a number of years, and which caused very deep wounds on either side. Though the scabs have healed, the scars still remain deep inside, though on the surface, the signs are growing fainter. But will they ever heal? Only time will tell. My behaviour caused a breakdown in communication with my wife and family, and almost led to a divorce as there was no indication that I had an illness causing the changes in me. Now there is a reversal of roles. My wife is now the man in the house, working as the breadwinner while I stay at home. She makes all the financial decisions, while I struggle to manage the complexities of a few pounds pocket money.Dealing with family matters, while I just can’t make up my mind on anything, and forgetting what I have decided, when I do decide. Dealing with the security of our house, while I gaily swan out, leaving doors and windows unlocked. Taking my place at school parent’s evenings while I stay at home in case I cause a scene. Dealing with the hazards of driving, while I admire the scenery, and so on. She has to shadow me, to protect me from myself, and double check everything I do. She doesn’t trust me any more and it’s hard to see how she can hold me in the same regard, or treat me with the same respect, as she once did. Have I become a burden or a liability to her? When dementia walked in the door, did romance fly out of the window? What keeps her going and motivated, love or duty? How does she cope when things become too much to her and she can’t turn to me? The answer is, she is one in a million and takes everything in her stride. She has grown broad shoulders and has taken over the role of, what is in effect, a one parent family. You could say my quality of life is good. I have little responsibility and get looked after. It was only while writing this that I realised I have a cushy number. Time does not permit me to say more, but I will finish by sharing with you the words from a song from Gigi (I Remember It Well, performed by Hermione Gingold and Maurice Chevalier), which is typical of our daily conversations. SCOTLAND PERSON WITH DEMENTIA

A. Choices > 1. Sample narratives
• I am currently doing a postgraduate course at Ritsumeikan University. I am also a care worker. My late grandfather had dementia. He died when I was seven years old. It was twenty years ago. Thinking about it now, I feel like I could have done something more at the time. QOL is a difficult issue. I think QOL should be considered for each individual case rather than as general QOL for all people with dementia. Everyone has QOL. Most of the things that make people with dementia happy would be the same kind of things which make us all happy. Of course there are exceptions. Regarding choices, I think it is necessary to have the opportunity to change choices to suit him/her rather than making a rigid choice. I am sorry I cannot suggest a particular method for this. Thank you very much for such a useful time I have had at this conference. A1 JAPAN PROFESSIONAL

B. Relations/Communication > 1. Sample narratives
• I was very independent, very happy. All these qualities attracted him to me, now I’ve changed. We had a great intimacy before we developed the illness. Need new ways of communicating. How to do that dance better? Was even tempered, now I flare up or I cry. It makes me mad when he doesn’t listen to me. My daughters’ lost their father in 1988 when they were 12 and 15. When this happened they were terrified of losing me – lots of denial going on. - You’re not trying hard enough. - Just exercise your brain. Eventually they came around – they do most of the work, I participate. They shield me. Communication is the key to maintaining a good relationship. Patience, patience and more patience. Learn different techniques. I’m angry he’s not listening – what’s it going to be like in 5 years. Humour, generosity, set limits on behaviour. Find a physical intimacy that works for both sides. CANADA PERSON WITH DEMENTIA

J. Basic Comforts > 1. Sample narratives
• Improvements Environmental: by providing a safe environment for patients especially at night to overcome problem of night wandering. I have worked for 12 years in a secure specific dementia unit with mainly D6 patients. I was sitting next to a little, frail 93 year old lady about 4'8" when another patient male about 6'2" walked past. This little lady was extremely confused but had an occasional lucid moment and she said to me 'I'm scared of that man, he follows me and sometimes comes into my room at night'. Consequently the bedroom doors in our unit were cut in half to make a stable like door, the top half left open at night but the bottom half closed with a latch lower down on inside so as to keep wandering patients out. I felt for this little lady who most of the time was not able to express her feelings but could feel her fear over this situation. NEW ZEALAND PROFESSIONAL

L. Strengthening Services > 2. Any other
• Interaction from initial diagnosis to final stages of disease with same team of supports - eg geriatrician, Dr GP, educators, carers, careworkers, rest home with day care, respite care, full time care Stage III dementia facilities. Able to be accomplished in smaller towns and very beneficial. Maybe local AD support groups and rest home and primary coordinators of the total holistic interaction.

L. Strengthening Services > Staff training
• It seems to me that RGNs [registered general nurses] need to be educated regarding the needs of dementia patients, as they (mostly) seem to regard them as a nuisance, as they do not have time to give the personal attention that my volunteers are able to offer. PROFESSIONAL UK

B. Relations/Communication > Keep communicating
• Listening to what they have to say without interrupting them. Giving them time to answer.

B. Relations/Communication > Connections
• Make your friends their friends. Most of their own might not come around anymore, especially when they had retired a long time ago.

A. Choices > Flexible routines
• making sure you don't sit/place next to a person who is not suitable, pushing into doing things they are resistant to - showers, sitting, toileting, restraint, ignoring in a group/solo situation, one particular person things OT time is threatening - taking over, discussion of past time eg war which are sensitive times, another does not enjoy the music volume.

L. Strengthening Services > Staff training
• Multidisciplinary teams must spend time to feel comfortable together, because out of team strength comes the confidence to take/share risk.

K. Supporting Caregivers > 2. Any other
• My family supporters get regular respite by way of me leaving to travel with friends or visit friends, or they travel for a week or so at a time for their holidays. This is a big help to our PWD/carer relationship.

B. Relations/Communication > Support groups
• Ongoing support for the person with dementia is so important. Often there are facilitated support groups for care-partners but not for the person with dementia. We have found the one on one respite time to be a real blessing as my respite carer knows just when to motiveate me to do more and when to help me to slow down. With her help I accomplish things I thought were beyond me forever. Australia Personwith dementia.

H. Spirituality > Connected to God
• Opportunity to worship, spend time quietly and reflectively.

I. Stimulation > 1. Sample narratives
• Positive Ability to be independent, going for a walk. Being able to go to church on Sunday. Making planter/nesting box (my Dad was a carpenter and joiner prior to retiring). Laughter, laughing at life/TV. Going for a drive (Dad no longer drives). Having a snooze in the afternoon. Being relaxed. Having a good nights sleep. Sitting in the sun. Completing a task. Enjoying and preparing meals. Enjoying the company of grandchildren. Successfully communicating - able to talk and be understood. Being warm and comfortable. Negative Being incontinent - especially in public. Not being able to speak properly. Feeling down in the dumps. Your wife being upset with you. Doing silly things - making a cup of tea in the sink. Frustrations - not being able to communicate with people to allow them to be understood. Not being allowed to time to complete the tasks. Forgetting what I wanted to do. People taking over tasks I can manage. Being bossed around by my wife and daughter. Not being able to drive - a major upset/issue. Comment - It is a struggle for me personally to sit here and presume what are QoL issues for my Dad, this is my perspective, not his. NEW ZEALAND CAREGIVER

D. Identity/Continuity > 1. Sample narratives
• Positive Accepting where the person of dementia is at. Timely assessment – reassessment and assistance so that whole family is supported. Promoting independence and a positive characteristic - living. Maintaining prior cultural perspectives. Encouraging previous strengths. Appreciating the contribution a person with dementia makes. Resisting from 'testing' the person with dementia. More public awareness of the experience of dementia. Removing 'medicalisation' of dementia. Why does someone become a 'patient' on diagnosis? Professionals speaking to and listening to people with dementia, rather than concentrating on their carers. Negative Being impatient with the person - not giving them time to live life at their own pace. Not allowing independence to carry out usual daily routines. Withholding information on diagnosis/services - or not giving opportunity to continue accessing information. NZ PROFESSIONAL

L. Strengthening Services > 1. Sample narratives
• Positive Acknowledgement of human rights for those having dementia. Enjoying being human through inclusion. Positive stimulation. Agencies/Carers/Public legislation working with families rather than for. Recognising a holistic view may be appropriate. Encouragement to work at own pace. Negative Overload of information. Taking away the dignity by lack of inclusion in decision making and doing for self. Changes instigated hurriedly and without inclusion. Facility unavailability in communities ie rooms in public buildings for dementia people to have time out when accessing public facilities. Loss of male role. Expectations that all fit into one mould (non-individuality, unavailability of specialist cultural resource to meet both the person with dementia and family need in relation to food, language, emotional support and ethnic resource. Lack of public education. NEW ZEALAND CAREGIVER

G. Creativity/Aesthetics > 1. Sample narratives
• Positive Availability to information about dementia - written, verbal, IT - when needed, where needed - even rural/remote areas. Supportive understanding partner (person with dementia has little/no choice in this). Opportunities to continue/aquire new (illustrated doctor at day centre) - skills, tasks, interests. Acceptance of family and friends of person - inclusion in family/social occasions. Safe/pleasant environment - for me it would mean being able to spend time outside. Opportunity to worship, spend time quietly and reflectively. Chance to listen to music - appropriate to one's taste. If in residential setting - opportunities to leave residential setting. Sharing responsibilities and privileges of care with others. A clear plan for future - reassurance about ongoing care. Care offered that is appropriate to language and culture of person with dementia. Negative In residential setting - predominance of medical model of care. Person with dementia being part of a 'dysfunctional' family (not much may be able to be done about this if family unwilling). View of life that doesn't see sickness/suffering as an integral part of life. Financial hardship placed on family of person with dementia. NEW ZEALAND PROFESSIONAL

D. Identity/Continuity > 1. Sample narratives
• Positive Be able to speak and have one's own say. Feeling valued. Emotional well being. Feeling loved. Taking time to talk with person with dementia. Let people with dementia have the choice to decide things. Try and have fun. Not always being watched. Negative Do not make people with dementia feel like little kids. Don't always assume what you give people to eat is always what they wanted. Have the respect to ask them first. NEW ZEALAND CAREGIVER

G. Creativity/Aesthetics > 1. Sample narratives
• Positive Being taken outside. Walking outside with bare feet. Taken to the seaside. MOTHER NATURE as a spiritual dimension. Being offered flowers, the first autumn leaf, daffodils, lambs etc. Being taken outside at night to see the stars. Out in a boat. Reminiscing. Singing in the shower. New challenges. Keeping valued place in family. Being read to - old favourite stories, poetry, prayers, jokes and funny stories. Solitude - time alone. Painting. Ride a horse. Drive a tractor in a field. Work. Aromatherapy. Walking. Holidays, concerts, movies. Use the name - ask family - caregivers knowing who you were and are. Ice cream. Birthday cakes. Negative Loneliness. Too much choice. Noise overload. No clocks. No newspapers. No calendar. No touch. Playing silly games. Being kissed by strangers. Being played music you hate - eg classical or country and western. Not using persons name. Losing friends. Losing grandchildren. Losing pets. Corecting people. Aruging. Family not knowing carers names. Too many staff changes. NEW ZEALAND PROFESSIONAL

J. Basic Comforts > 1. Sample narratives
• Positive Cholinesterase inhibitors. Carers who understand their history, Using antipsychotics sparingly. Having family carers who are there/visit. Having had earlier positive life experiences. Good physical health - vaccinations, BP control etc. Religiosity/strong sense of spirituality. Being physically near children. Adequate nutrition. Uninterrupted sleep. Sufficient finances to purchase good residential care. Being recognised. Not being depressed. Good eyesight/hearing. Living in a community/society that values the elderly. An empowered caregiver who chairs a care giving 'committee'. Doctors well trained in all aspects of dementia. Well-designed physical environment. In residential care sufficient and well trained caregivers. Being bathed in love. Physical touch. Able to express sexuality. Being safe. Participation in research trials (verbally). Regulatory systems which fail to reimburse appropriate during therapy. Negative Physical pain, physical illness, psychosis, excess sedation, side effect of medication - cholinergies - antipsychotics. Ageist society. Hurried hassled caregivers. No access to transport. Caregivers who make environment too safe, too risk free. Noisy, unstable environment eg blasting TV, bright lights. Caregiver who is physically unwell. Caregivers who impose their religions/world view on the person with dementia. Poorly trained doctors who feel little can be done and are reluctant to prescribe AChEls. Being given insufficient time to eat or not getting assistance if needed. Urinary or faecal incontinence. Lack of physical touch. Alcohol excess (past or current). Medicalization of dementia. NEW ZEALAND PROFESSIONAL

J. Basic Comforts > 1. Sample narratives
• Positive Ensuring that communication is clear - allowing PWD time to understand and respond. Inclusive conversations and discussions. Being included in activities and allowed to take time to get things wrong. Being able to do things their way and take chances. Good health care - ie ailments treated, good fitting teeth, hearing aids. Being encouraged to pursue long standing interests and activities. Negative Not being included. Being bossed around - loss of autonomy and control over your own life. Too great a use of medication. Being obliged to spend long periods of time with people where the only thing you have in common is the illness. Finding yourself in a locked environment when you are a person who has always loved to walk and be outside. NEW ZEALAND PROFESSIONAL

B. Relations/Communication > 1. Sample narratives
• Positive Family/friends/community need knowledge of the dementias. Community education sessions provided to all age groups eg children in schools, young adults who interact with people eg bankers, police, social services, seniors in clubs, churches etc. Literature provided appropriate to these age groups and also cultural variations. Maintenance of independence and autonomy – this follows understanding and education. Carers need to be careful not to 'mother' or smother the person with dementia, each needs to understand the individual. What was their past life? What would they normally like to do? Do we need to allow the person to take some risks which are not serious safety issues? There are many choices which can be made by people with dementia throughout the day. Carers can give emphasis to thinking about looking for opportunities to give choices and feelings of the person being in control. Security/trust - maintaining a consistent approach within the home, or carers in residential care can help produce a feeling of trust. Regular routines (with input by the person with dementia) and continued communication and family, extended family and long-term friends. Appropriate touch and intimacy are helpful to feelings of security. Warmth. Sometimes basic issues of tidiness and hygiene are less important than the social interactive issues which are good feelings. Maintaining connections with old friends and clubs can be facilitated by enlisting help from those people. They can be assisted to understand the issues and enlisted to take a turn in transport and involvement. We need to think carefully about what the person has previously enjoyed doing, and use these things eg music, gardening, sport, literature, family outings etc. Stimulation can be helpful, but should not be overwhelming. This is very individual, and needs to suit the person's interest and also the stage of the disease. Respite for the carer is essentially helpful in maintaining QOL for the person with dementia. This is individual, could be in home, as an outing, or in a residential setting. Some helpful issues need to be introduced slowly, time may need to be allowed for assimilation of new ideas. NEW ZEALAND PROFESSIONAL

D. Identity/Continuity > 1. Sample narratives
• Positive Having education and knowledge of dementia. Investigation of the person's life story. Carers having understanding of the person's life story. The person with dementia having time to be understood. The person with dementia having time to understand. Having choice. Having familiar belonging around. Having opportunity to use personal skills. Having trust in caregiver. Having understanding from caregiver re need for own space eg quiet times. Having a sense of purpose. To receive and give love. Reading to the person who is bedbound. Music that the person enjoys. "Time out" for the carer and the person with dementia. Being given the opportunity to grieve. NEW ZEALAND CAREGIVER

A. Choices > 1. Sample narratives
• Positive Having time spent with the sufferer to answer the constant question of "Why am I here?" Laughter - sharing a joke. Hugs - both male and female residents respond positively to hugs and gentle touch. Helping -with household chores, eg washing a car, peeling potatoes, hanging out washing. Van rides – outings for us are best between 30 and 20 mins and are successful to the local hardware store and back or to the marina for a ride on our boat. A cup of tea with company. To be treated as an adult. Pets - out West Highland Terrier is popular with many of our residents. Negative Being rushed. Not being given freedom, ie restrained in chair. Being left alone. Not being able to lead "this place" and get on the road. Not enough people to care for the residents. NEW ZEALAND PROFESSIONAL

L. Strengthening Services > 1. Sample narratives
• Positive Interaction from initial diagnosis to final stages of disease with same team of supports - eg geriatrician, Dr GP, educators, carers, careworkers, rest home with day care, respite care, full time care Stage III dementia facilities. Able to be accomplished in smaller NZ towns and very beneficial. Maybe local AD support groups and rest home and primary coordinators of the total holistic interaction. Negative Lack of staff (in Rest Home Situations) education in dementia in NZ eg practical help and activities available for individual cases if they arise. This applies especially to the smaller rural communities where it is expensive to get people to come and educate dementia staff. Theories are great but not always practical when you are working in a 'hands on' situation. (Tutors, teachers etc are often people who have not had practical experience). NEW ZEALAND PROFESSIONAL

G. Creativity/Aesthetics > 1. Sample narratives
• Positive Pets. Treated as an adult. Make them feel worth of doing. Security. Show that you care towards the resident - taking, kiss on the head, hug. Make what you say to the resident sound to the resident genuine. Include resident in choices of what we are about to do, whether dressing, where to sit, what to do. Praise - they have done a good job - gee you look lovely today - gee since you have had a shave you look handsome - that brooch looks beautiful, where did you get it? - thanks for helping with buttering the bread - continued praise and reassurance for what they are doing. Supervison - rather than doing for or giving them a chance to do. Being able to participate with ADL things - peeling potatoes/vegetables - buttering bread - van rides/taking outings - going shopping - having morning/afternoon teas - doing dishes - having hair set - sherry with meals - massage of feet or all - music/dancing – washing cars - sweeping - cleaning shoes - picking flowers - going to the beach - putting nuts and bolts together - reading the newspaper - helping in vegetable/flower garden - hanging/bringing in of clothes on line – include when doing your own chores about rest home - hugs and smiles - knitting/sewing. Encourage with food and fluids without them realising for what reason you are doing it for. Joking with resident - have fund - it doesn't matter how stupid you may look if it gives the residents pleasure that is OK. Negative Speaking crossly, scalding for something no done right, give more space, arguments, showing that you disagree with what they are doing, making sure you don't sit/place next to a person who is not suitable, pushing into doing things they are resistant to - showers, sitting, toileting, restraint, ignoring in a group/solo situation, one particular person things OT time is threatening - taking over, discussion of past time eg war which are sensitive times, another does not enjoy the music volume. NEW ZEALAND PROFESSIONAL

A. Choices > 1. Sample narratives
• Positive Public Understanding and Acceptance. Validation as ME. Sense of control over and inclusion in personal life matters. Choice. Encouragement. Peace (as seen me me). To be enabled to achieve according to own standards and goals and maintain sense of still retaining previous abilities (PRIDE). We all must be allowed to ACHIEVE something, anything (in own eyes). Be allowed to reminisce. Taking time to find and satisfy personal needs - they haven't 'gone away' despite DEMENTIA. Negative Domination by Authority - facility or domestic and over regulated. Being denied personal choice. Personalities are so different - needs and conditioning have produced the "me" who, at this stage, still 'need'. AUSTRALIA PROFESSIONAL

F. Enjoyment > 1. Sample narratives
• Positive Relaxed, unstructured routines except meals. Freedom to walk around in a safe environment. Showing love and acceptance. Supporting caregivers. Role modelling expected care. Plenty of food and fluids available. Music playing and a homely environment. Regular family support meetings. Close relationship with families of residents and involvement in careplanning. Spending time with clients, talking about their past, ie profession, travel, etc. Respecting family members who are grieving for the loss of their loved one to this illness. Lots of humour ie staff dressing up in themes. Engaging in short conversations with residents who don't actually make sense, chatting with them makes them feel respected and 'normal'. Negative Expecting individuals to 'behave themselves'. Tired caregivers trying to rush to achieve their workload. Poor training of caregivers. No available dementia training for caregivers. NEW ZEALAND PROFESSIONAL

D. Identity/Continuity > 1. Sample narratives
• Positive Reminiscing tools - tools of trade, child times, school days etc. Family life. What they thought of life. Negative Not having an individual programme to meet the needs of that one person. Not taking the time to hear their story. Not taking the time to let them choose what they want to wear or go and do. NEW ZEALAND CAREGIVER

A. Choices > 1. Sample narratives
• Positive Routine. Same things happening at the same time everyday. Remaining in a familiar environment with familiar people. Risk taking. A carer who can allow autonomy by minimising the risk and maximising choice. Recognition by family that there are changes due to dementia. Negative Other people unable or unwilling to accept or not able to cope with redirecting. Rejection by community in particular a community of friends themselves ageing who feel that they are no longer able to cope with having a person with dementia in their midst. The community imposing options for care - respite in a rest home without discussion and day care that did not meet the needs of the person with dementia. When providing care such as respite it is sometimes difficult to tell whose needs are being met. The same could be said for the decision to place permanently in a rest home. NEW ZEALAND PROFESSIONAL

D. Identity/Continuity > 1. Sample narratives
• Positive Treated with dignity - accepted of who they are - in spite of their progression of disease. Knowing that someone cares and accepts them - who will take time to explore community and enable them to explore participation to enable them to participate within their community. Being heard and enabled to participate or just be as they want to - to have a choice, take time to develop relationships and stay there till no longer required - by client or caregiver. Work alongside them till able to adjust/accept that no longer able to manager on own safely - being aware of safety v autonomy. To have fun, a giggle, even if unable to verbally communicate can still enjoy things. Maintain interests/interactions, even adapt them so can still participate in family - continue with sense of belonging. They are still unique people - in spite of dementia. Safety in the home - awareness of needs there if other medical problems or sensory impairment. Treated as unique individual persons and adjust to their uniqueness, their physical, mental and spiritual dimensions. Negative. Over-stimulation, fatigue not noticed by caregivers or not understood. Doing things or made to do things they do not want to do and have no interest in. Inappropriate environment - where misinterprets things. Frequent changes of environment. People with dementia respond to the emotional context and if someone does not care pick it up quickly - or in a hurry then behaviour changes. Being controlled. People not taking time to adjust to the individuals (pwd) needs - expecting them to fit into a mould - when they have their past life stories. Social isolation and neglect. NEW ZEALAND PROFESSIONAL

C. Love and Trust > 1. Sample narratives
• Positive Trust the care giver is supported and cared for - trust their needs and acknowledged and addressed. Trust time is given to address the needs as defined by person with dementia and their, care giver and to discover what those needs are. This is very much influenced by cultural, resource, policies and society's attitude in general. When a person is acknowledged as more than their disease/dementia. What is addressed is who they were before dementia and who they are now. That the persons strengths are acknowledged and worked with. Negative The care giver is unsupported and unheard. When the person is ?? with as the disease/dementia and not as a person. That time is not given to fully address the needs of the person with dementia and their carer. Time or lack of it is affected by cultural world view, resources, policies and society's attitudes in general. That the focus is on what is wrong about the person and what they cannot do, or should not do. NEW ZEALAND PROFESSIONAL

D. Identity/Continuity > 1. Sample narratives
• Positive Use of humour and laughter. Lessen anxiety by security and fun – enjoying life part of QOL. Involvement, control in own life - choice, empower. Lessen anxiety by acknowledging illness and needs - ie explain same concerns every day so that the feeling of confusion and anxiety lessened 'I told him yesterday, he won't remember if I tell him again so why bother'. Acknowledging person and individual life history - keep emphasising the individual in activities, conversation or choices that are offered (ie relevant to person). Support carers - respite, listening, asking what would be helpful, supportive environment where time can be spend with person with dementia (as opposed to general public where awareness is not yet the best). Public awareness of issues faced by people with dementia, especially regarding the person as an individual - acceptance, support, helpful and with interactions. Some risk taking to ensure choice and involvement in activities important to the person for as long as possible. Resources to enable greatest autonomy – ie technology to aid people to stay in own home as long as possible, ie smart house. Negative Disregard for person - ie talking about someone in front of them as if not there. Assumptions by people who do not know and fear ie loss of abilities in some area - loss of abilities in all areas (unable to communicate verbally - unable to feel or understand). Stigma, uncaring interactions and discrimination and discounting the person. NEW ZEALAND PROFESSIONAL

A. Choices > 1. Sample narratives
• Positive Very individual - let individual make decisions/give time to make decisions. Let individual choose. Allow person to express likes, dislikes. Try to provide for the likes. Safe environment — pleasant environment. Provide company but in small numbers and not for too long. Provide lots of fun, we need to laugh. Let me eat what 1 like. Tell me something lots of times to help me remember. Provide a secure, loving environment. Communicate clearly and slowly. Take person out to do the things he/she has always enjoyed doing eg window shopping, walks, movies. Negative Do not make me do the things I don't like, I have never liked because you think it is good for me. They are not good for me! Don't remind me that I have forgotten. NEW ZEALAND PERSON WITH DEMENTIA

A. Choices > 1. Sample narratives
• Positive Trust in caregiver "getting to know' the person that they are. Person with dementia has the choice. Involvement of the dementia person. A person with dementia should be respected. Listen to what the dementia person wants. Give the person with dementia freedom. Environment to suite the dementia stage. Privacy. Family and staff education. Within care family - need of more time on individual basis. I am not a child. I have inner essence of me. Negative Being told what to do. Not given choice. As a carer, I find you must not tell the person with dementia what, when to do if they do not wish to. NEW ZEALAND CAREGIVER

D. Identity/Continuity > 1. Sample narratives
• Positive Love, meaningful personal relationships, security and safety, free from financial worries, ability to live one day at a time, time and understanding to make choices, peace of mind, serenity, having fun, social interactions within a community/groups, touch, meaningful activities. Negative Other people's judgements, discriminations, poverty, being told what to do and when to do it, being treated like a child, being unloved, mistreated, talked down to, treated like a number by the professionals, professional "'experts' know it all, they know best. NEW ZEALAND CAREGIVER

A. Choices > 1. Sample narratives
• Positive Caring carer. Stay as long as possible in own home. Supportive family. Keep to routine (as it was) as much as possible. Allow the person to make decisions. Allow choice. Continue to be loved and cherished. Respect. To be themselves. Accept challenging behaviour. To allow independence for as long as able. To be an individual. To allow to express own feelings. To plan own path way. Listen to the music not the words. Allow risks. Support groups including PWD. Alzheimer's Society, community support workers. Conferences. Negative Over protection, taking away independence, overwatched, decisions made for me (pwd) eg food, time planning, what to wear, where to go. Treated like a child. Not treated like before. Having a stressful carer. Thinking about how the spouse of an older age is going to manage. Enjoying fun and laughter but not at time at the appropriate time and not being accepted for this. I've got a client who does this and family (not being accepted) are horrified. NEW ZEALAND PROFESSIONAL

B. Relations/Communication > 1. Sample narratives
• Positive Universal understanding (micro, mego, macro). Better access/availability of quality information to those who care for people with dementia and those also with dementia. I am astounded at the often gut-wrenching accounts from people at this conference, discussing their experiences of desperation and frustration and trying to access better information about dementia eg legal rights etc. but also the general public ignorance and avoidance of this subject. Further, I have been troubled by many of the speakers at this conference, especially from the PWD's. Probably the most pronounced issue to come out of the conference (to me) is the regular experience of feeling it is other people's reaction to/understanding of dementia or lack thereof that often dictated the QOL of people with dementia. As a 30 year old working in a Hospital, I am among the younger persons at this conference. What has really hit home to me is that my generation knows next to nothing about dementia. QOL would improve for people with dementia if younger people somehow had a palatable (I don't know how) way of learning and experiencing the world to an extent, of those living with dementia. To me it goes without saying that basic human rights also must be given to everyone. Time and again people have discussed the importance of respect, love, patience, empathy, trust and honour in order to enforce and improve QOL for people with dementia. Negative People not wanting to or not feeling the necessity to extend them the same degree of respect, love, honesty and understanding. I've heard 'many' PWDs state they have been disgusted at the regularity of people feeling they can cut social and emotional corners so to speak, in their dealings with people with dementia. Lack of education, confidence, training, for caregivers in residences. NEW ZEALAND PROFESSIONAL

L. Strengthening Services > 1. Sample narratives
• Positive Views gained in formal care settings. Appropriate and adequate one to one time with people - including carers and others. Health problems recognised, fully identified and treated promptly and appropriately. Being considered a whole, worthwhile person especially in relation to food, equipment, medication and other resources. Communication for family with educational and supportive information and encouragement and understanding. Negative Lack of recognition of 'rights' to ie treatment. Over-crowding. Limiting of autonomy in choice. Lack of commitment by carers. Lack of education of carers and families. NEW ZEALAND PROFESSIONAL

D. Identity/Continuity > 1. Sample narratives
• Positive. Involve family/main carer in all aspects at care planning. Have staff hear the family's story and include the detail into persons life in a care facility. Include carer and family in facility life. Arrange facility activities around person and family life eg celebrate wedding anniversary in the facility. Identify key QOL scale points and have this as part of on-going assessment of person. For person at home - enable carer to be assessed to identify illness but also provide opportunity to discuss any concerns/symptoms they may have. Appropriate touching by staff - all kinds of touching by family/friends. Offer to include extended family in 'support group' or similar. Heir/sibling need is often overlooked - to be involved in discussion on how to 'help'. Allow individualisation - at all levels - home and in care. Negative Carer not able to complain about poor quality of life services. Do not know how. Not feel welcome to raise concerns. Afraid their family member may be treated badly as a result. Physical abuse by carers - family and care staff. Insufficient time given to positive, individualised activities in residential care. NEW ZEALAND PROFESSIONAL

A. Choices > 1. Sample narratives
• Promote quality of life by remembering each person is individual and what they want to do, or can do, on any given day or time of day, will differ from day to day. We all have good and bad days no matter what our age or our stage of dementia. God help anyone who gets me up at 7am to shower when I am elderly. Hindering quality of life by neglecting personal choice, by neglecting physical touch and caring without a sense of humour. Laugh with the person, because of the person, not at the person. NEW ZEALAND PROFESSIONAL

A. Choices > Individual care plans
• Promote quality of life by remembering each person is individual and what they want to do, or can do, on any given day or time of day, will differ from day to day. We all have good and bad days no matter what our age or our stage of dementia. God help anyone who gets me up at 7am to shower when I am elderly.

I. Stimulation > Moderation
• Routine. Same things happening at the same time everyday. Remaining in a familiar environment with familiar people.

F. Enjoyment > 1. Sample narratives
• Security, peace of mind, being loved and wanted, to belong, to be able to have a choice, laughter is the best policy, understanding, being able to express yourself. Take time to listen to the person with dementia. We live for the moment not the day. Respect their feelings and beliefs. The biggest thing is to laugh with them, not at them. D Australia CAREGIVER

F. Enjoyment > No rushing
• Should take the time to hear their story. Take the time to let them choose what they want to wear or go and do.

L. Strengthening Services > 2. Any other
• Staff levels with time to give to the resident when you see, love and care.

G. Creativity/Aesthetics > Activities
• Sufficient opportunities for carer to have time out for rest/refresh.

F. Enjoyment > Satisfy personal needs
• Taking time to find and satisfy personal needs - they haven't 'gone away' despite DEMENTIA.

J. Basic Comforts > Clinical care
• The medications that help us to enjoy an increased time of being able to care for ourselves, at least in part.

J. Basic Comforts > Clinical care
• The patience and understanding of a good General Practitioner.

A. Choices > 1. Sample narratives
• To have patience - offer help - but don't take away independence. To have security - to have familiarity. To see happy smiling faces - to be touched if that is that they like. To be understood, not patronised. Not to be reminded of bad things which may have happened. Negative Sometimes the carer! Insisting on a bath or shower daily - so what if you don't - has anyone ever died from NOT having a bath!! Being treated like children. Having to do things that they do not want to do. Denial. Loss of rights. Sometimes too much knowledge. PROFESSIONAL

D. Identity/Continuity > 1. Sample narratives
• Treating each person with dignity. Spend quality time with person. Endeavour to include people in decision-making/at their level. Regard each person as spiritual being (not necessarily religious) and valuing each one's personhood. Listen, really listen to them. Work with them according to the skills they still have. Good physical care, tidy, clean clothing, tidy hair. Holistic care, physical, spiritual, mental. Don't take away all the opportunities to do things - to take an initiative. Sufficient opportunities for carer to have time out for rest/refresh. Have fun-time, for laughs. Physical touch/where appropriate. Encourage memory times, what they do remember is important. NEW ZEALAND PROFESSIONAL

C. Love and Trust > Trusting relationships
• Trusted person may be chosen and not be a member of the family: As I work, I have a carer coming to help mum for some of the time I am away. She feels safe and secure with mum and whom she has named Jane. Mum treats 'Jane' as part of the family and welcoming when she arrives. At times she wil get angry ans verbally aggressive with her as she does with me.

K. Supporting Caregivers > 1. Sample narratives
• We tend to see people with dementia and carers once the disease is fairly advanced. Our focus is also on the quality of life of the carer and providing support to the carer thus enhancing (we hope) the quality of life of the person with dementia. The carer often makes a difficult choice to even contact the Alzheimer’s Society. Our role is to provide carers with the information to make choices right for them at that time and to support them in their decision but also to be non-judgemental about their choice in a way that will enable them to make another choice, maybe even back track if they wish. Given that carers can feel very strongly the responsibility they have for the person with dementia, I think we should acknowledge that too many choice or any choice can sometimes be overwhelming for them too. NEW ZEALAND

K. Supporting Caregivers > 1. Sample narratives
• What I think is the relationship between my quality of life and the quality of life of my main family supporter. We have certainly seen a great reversal of roles since my diagnosis. ‘G’ has had to take over some of the things I was responsible for but I can no longer do. ‘G’ has had a real drop in his quality of life. From being pastors of a church with all the planning and activity that entailed to living day to day, depending on what my condition is that day. While he is quite happy to care for me he no longer has the personal satisfaction of his previous work as well as his concern for me and my loss.I would add though at this point that this varies from time to time. As we face each challenge and find the ways to best handle each situation we find that our quality of life comes up again. Also though there are times when he has more concerns than I do, as I don't always realise the problems I am having or causing. In many ways I think my quality of life is now better than his as he has to take the responsibility for everything. It is true to say that our quality of life is linked together and definitely both affected by the problems caused by dementia. ----------------------------------------- AUSTRALIA PERSON WITH DEMENTIA

B. Relations/Communication > 1. Sample narratives
• What I think is the relationship between my quality of life and the quality of life of my main family supporter? My care partner and I are still totally separate accounts for everything although he helps me out of situations too hard for me. He is a longtime boyfriend and has had a rude awakening but is proud of my functioning skills so when I do something without common sense he has a hard time with it. HAWAII PERSON WITH DEMENTIA

B. Relations/Communication > 1. Sample narratives
• What practical help has been of use to me in maintaining or improving my quality of life as a person with dementia? Education, understanding and support from Alzheimer's Association. Living with memory loss group and ongoing support group Support, education and encouragement from fellow DASN members Respite care for me to give my husband time out and enable him to better cope with caring for me Assistance from my respite carer with projects such as enabling me to sew again with her assistance as needed Financial assistance from our Government e.g. my husband receives a carer's pension to look after me Subsidisation of my medications Ladies club at our Respite house weekly with suitable activities Planning devices so I know what is happening, what needs to be done and how to do it so I can participate with some degree of confidence Sharing with others who have similar experiences and helpful suggestions of ways they have found effective in the same or similar situations. AUSTRALIA PERSON WITH DEMENTIA